My daughter has a small (3 mm) cyst in her brain that the doctors are saying is periventricular leukomalacia. I know that puts her at increased risk for cerebral palsy. We'll be going to have an evaluation with the PT/OT/DT as soon as her sister is out of the hospital and I actually have time.

Does anybody have a child with CP, and what were some of the early signs? I've done some research, but she's still only adjusted age -3 weeks old, so I don't think she's really supposed to be doing much of anything right now! But for those whose children do have CP, what were some of the very, very early things that stood out?

Thanks.

Amy

Julia, ^Caitlin^(due to encephalocele complications) & Gabrielle

My son has PVL and moderate Spastic Diplegia Cerebral Palsy. Initially I was the least worried about him because he was the first to roll from stomach to back but I later learned this was part of his spasticity. After those first few times it was a long time before he was able to roll over on his own again. Looking back now one of the first things that we noticed with Dylan was that he would cry whenever anyone but my husband or myself would hold him. Even now (he is almost 4) it takes him awhile to warm up to people. Physically the first thing I noticed was when he was 5 months old (2 months adjusted) When I would lift my other children into a sitting position they would lift their heads up and Dylan would not. We had him evaluated by EI and they started him in therapy at 6 and a half months. We got a diagnosis of Cerebral Palsy when he was probably 9 months old. If you have any other questions please feel free to contact me.

Cindy

Jacob, Dylan, Emily 5/05
Timothy 6/06

Dear Amy,

The NICU ultrasound/MRI showed that my daughter had bilateral PVL, and she has cerebral palsy, probably spastic diplegic (though no official diagnosis yet -- I've been told that we won't get an official diagnosis until she turns 3 -- has anyone else heard that?). Because we had been told that she was at increased risk for CP, I was watching her like a hawk and had her in therapy from the time she was brought home from the hospital. BUT I didn't know too much about it -- like you, I didn't know what to look for and I wasn't aware of the different kinds of therapy that might be available.

In retrospect, I think I would have learned more about a) what to look out for and b) how to massage, stretch, position my daughter to respond to the spasticity and stiffness that were emerging, in ADDITION to getting the physical therapy. A book that I have found that would help you in both respects and that I would highly recommend to you: Teaching Motor Skills to Children With Cerebral Palsy And Similar Movement Disorders: A Guide for Parents And Professionals - Paperback (Jul 19, 2006) by Sieglinde Martin.

I know that it is very difficult to be in the position of having to wait to know whether/to what extent your daughter will be affected. Just know that there is A LOT you can do to help her! Good luck and please keep posting!

Rachel

all 3 of mine have cp 2 A&B were dx mild they both had a grade 1 bleed.and baby C has severe in his legs and moderate in his arms he had a grade 3 bleed and pvl he has been getting pt since he was home i was told by EI that with a cp dx they get pt right away. he saw a neurologist in the nicu (due to the mri finding pvl) and she gave him the dx. what she pointed out to me was the stiffness i didnt see it till she showed me he was about 10 weeks old it was before his due date. then at our neuro follow up she gave a & b the dx they were 6 months old. they all have been getting pt since they were home it was once a week now they get 3x and jax gets ot also now. i know that the dr says we wont know how bad it is or not till they hit major milestones. what a difference the pt makes you really should get them in for a evaluation asap it may take a while to get in. well i hope that helps , its still pretty new and scary for me also.

JONNELLE
GBB 9/6/08
30 WEEKS